Grandparent’s only! WE NEED HELP!

As we see things starting to come together with Life of Reilly this is one of the things I’ve felt most passionate about from day one.

There is nothing my mam and dad won’t do  for my children and my nephews.  They have always babysat for them, had them over night, took them to Disneyland Paris and the likes.  Usual grandparent stuff that makes our lives as parents that bit easier.  So it’s hard for me to see them struggle with Reilly.  My dad certainly gets stuck in and has a go but there is no denying it is difficult.  My mam feels helpless that she’s actually afraid to take him out alone a) he does a runner most of the time and b) I struggle with his meltdowns at 43 never mind 70.

As much as they listen to me about autism I don’t think anyone really gets it unless you live it 24/7.  We as parents sometimes withhold things that happen within our four walls to save them from worry, stress with relationships, money, lack of sleep, depression, anxiety etc.  We bite our tongues regularly at advice given with the best intentions.  We are tired, anxious and sharp sometimes, most of the time to be honest which is often mistaken for ungrateful, antisocial and rude.

I want them to feel more able to understand Reilly.  To not take things personally, to understand how they can help.  Grandparents play a crucial role in keeping the unit functioning well.  Without those little breaks I get when my dad takes Reilly on a bus journey or to Mcdonalds I am honestly screwed.

They also need support and can find a diagnosis difficult.  I always find comfort with people who know what I am going or have been through and I think this session on autism and the chance to converse with others is essential.  It’s informal and it’s free!

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Back to school!

All that stress, no sleep, felt sick since 5am and what does he do?

Would you believe me if I said he got up at 7am, ate his breakfast, put on his uniform including polo shirt which is very rare,drank his milk and watched the Octonauts until his taxi arrived.

When it did arrive he jumped straight in and fastened his seatbelt and left without a care in the world.

I am not silly enough to think that this is it.  This is one morning, we have a full day and a return journey to tackle yet but my god i’ll take that this morning.  My friend Sarah also dropping a little one off this morning said he was in the sensory swing when she left and as happy as Larry.  Got the Life of Reilly this one.

Right Poldark series 2 episode 1 i’m coming for you!

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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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Happy Days

Moving on from my horrific night of panic the other night which was caused I think by me overthinking and underestimating  Reilly’s ability to cope with change.  I imagined our visit to his new school to be filled with starfishes on the tarmac, kicking school doors, biting teachers (he’s never bitten so thats ridiculous) and escape attempts.  Instead it was fabulous first of all taking off his shoes and putting on a pair of angry bird wellies he found at the door, playing with train track and painting Thomas toys, actual toys not drawings.  He didn’t want to leave! Queue the massive sigh of relief.

Not one to build up my hopes I prepared for a showdown this morning when I dropped him off to spend the morning on his own at Benton Dene.  Not a squeak from him, he didn’t even turn around as he was led off with his new classmates. I cannot express how happy this made me feel.  Where was the Reilly that wants me to carry him around on a piggy back 24/7?, don’t forget I am Hodor he is attached at most times, my neighbours will confirm lol.

I see some independence growing in my little man and I like it.  Picked him up took him to his current school Beacon Hill and happy days I’m back home.  No meltdowns.  Result!

I have so much love for both of these schools and we are incredibly lucky to have them  in North Tyneside.  I’m sure they must give patience out when studying in the special needs field.  I have never seen anyone stressed or outwardly under pressure with these fabulous little humans while in school.  Just fills me with confidence and praise in the work that they do.  We may not make it apparent but the second the kids are in school we breathe a sigh of relief that we know they are cared for and learning in superb environments and this is due to the people at grassroots level in those schools.  It is some respite time to refocus and plan for the day ahead and it actually saves my sanity.  I may start a petition for only 2 week summer holidays..Who’s with me? hahaha.

ps I must say I am completely shocked at how many people are reading this blog who are teachers, tutors and parents, literally every person I spoke to.  Might need a disclaimer signing in the near future 😉

 

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Switching schools

I’ve had a right stressful week.  Left half of my anti-d’s  in Ibiza and had a little flap about it and have felt a bit tetchy and on edge in general.  I hate it, hate anxiety I have far too much to do and think about for all that lark.

My added stress comes tonight not from the fact that Ronaldo just put his shirt back on but the fact that Reilly goes on Tuesday to visit his new school and new classmates.  Reilly is currently in a school called Beacon Hill, it is amazing and I love it but from day one every single professional we came into contact with while going through diagnosis and then discussing education said Benton Dene is the place for Reilly, literally everyone said that to us but if you’ve followed my blogs from the start you will know we couldn’t get him in.  The class sizes are tiny.  Reilly’s new class with have a teacher and 3 teaching assistants to just a small handful of children, they are renowned for working wonders with non verbal children.

We received a call to say Reilly had his place a few months back and it has been so hard trying to decide what to do.  Should he stay at Beacon Hill with the familiarity of the journey, the building, the faces or should we switch him now while he is little and start a new chapter at Benton Dene.  Approx 25 sleepless nights and the same conversation with Shane over and over again we have decided to move him and I pray it is the right decision.  My Mammy brain wants him to just be happy and comfy and not have to face the change but my Mam brain says professionals think it’s the right ting to do stop being a softy.

Benton Dene is closer to us which I like, great track record, happy parents who have given me excellent feedback and urged us to make the move.   I may go and loiter around the school gates for a couple of weeks incase he needs me ….  Reilly’s previous teachers will know this is not a joke lol.

Im absolutely terrified about tackling the switch to a new school after the summer holidays.  It’s a testing time after a weeks holiday back to his usual school so who knows what this will bring.

Remember that feeling the first day  your child starts high school.  Nervous, can’t eat, can’t sleep? I’ve been there but times that by 100 and you are scratching the surface on an autistic child starting a new school.  Its normal to feel anxious at times like that but autistic children suffer anxiety on a level you cannot begin to understand unless you live it.

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Alphabetically Autistic – A Social Enterprise

I have been bursting to tell you this exciting news.  Over the last couple of months myself, Alison Stanley from Red Diamond Theatre and my sister in law Kelly Best have been meeting to talk about what we feel as mothers of autistic children (ranging from child to adult) is missing from the system in terms of practical advice, not text book advice.  Real scenarios with real people.  People who live with autism 24/7.  The ones operating on 3 hours sleep and the ones dealing with problems daily.

Alphabetically Autistic is something that Alison has been working on for a little while.  I was ecstatic when she asked myself and Kelly to come along and give our views and my opinion on the play The Life of Reilly.

Alphabetically Autistic is a social enterprise that will focus on the A-Z of autism and will consist of 6 week workshops with plenty of time to converse with other parents in the same boat.  Available to parents of children awaiting diagnosis or recently diagnosed.   We will also run a group for grandparents, they are often missed out of the loop but tend to be the main caregivers when parents are in work.  These courses will be informal, non judgemental and humourous and will cover  benefits, sleep, obsessions, education  plus much more.  It will also include speakers who are on the autistic spectrum as well as health and teaching professionals to give their input.

We will offer day sessions to employers and workplaces to understand why that parent of the autistic child is sometimes half an hour late or needs a duvet day at such short notice,   they have often done a full days work before 7am.  How employees can assist and help with autistic children and adults also the benefits to employing an autistic person.

Alongside the Red Diamond Theatre Company we will stage The Life of Reilly with Glenn McCrory and Really Reilly a play designed to help neuro-typical children understand why some of their classmates behave differently.

We will offer an autism specific counseling service via Kelly who is a qualified counsellor for children and young adults on the spectrum, anxiety and depression levels are incredibly high but also parents who are struggling coming to terms with diagnosis.

We will offer products to make life easier such as the multilingual QR cards I found so incredibly useful whilst holidaying Spain last week.  Product advice which we will have tested as parents such as communication systems, trackers and clothing.

The possibilities are endless.  We will launch our first workshop in November and will host a ‘Rocking the Spectrum’ concert to kick us off in style at the end of October.  I really hope I will see you all there.

Please support us by following our facebook page Alphabetically Autistic and watch for updates.  If you are touched by autism in any way please do contact us and see if we can help.  As the tagline says this is practical not perfect, there’ll be no added glitter but everyone who attends will find it useful i’m sure.

Please contact us at alphaautistic@gmail.com for more information or if you would like to discuss sponsorship opportunities for Alphabetically Autistic.

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Really Reilly !

As I said in my last blog post there is a play coming this year The Life of Reilly but what I didn’t tell you is there is an offshoot.  A very special offshoot.

Really Reilly is a play that will be performed in schools and produced by Red Diamond Theatre’s Alison Stanley  the writer of The Life of Reilly.

Really Reilly will be a fun and informative way in educating the children about why some children are different to others, hence the phrase Really Reilly !?.  I know when Thing 2’s friends are around I love to listen to them asking questions about Reilly and hearing Thing 2’s answers.

  • Why’s he never got any clothes on?
  • Why have I got to go outside to cough?
  • Why is there a lock on the inside of your bedroom door?  (stops Reilly trashing his things and provides a bit of peace when required)
  • Why can’t he talk?
  • Whys he wearing headphones?
  • Why won’t he play with us?

This list is endless and they are genuinely very interested and tend to be much more kinder and patient with him once they are informed.  Wouldn’t it be great if we could do this for the masses?   I don’t see why we can’t.

I’ll keep you updated over the next week about Really Reilly but it could be coming to a school near you soon.  Awareness is key to gaining acceptance.

If you are a school and would like more information regarding Really Reilly please email alphaautistic@gmail.com.

 

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The world doesn’t stop by Shane

So you have child with autism, you have a diagnosis, you have a school place and even receive DLA.   All of the above are major obstacles you have to get over. Be under no illusions you will have to jump through hoops and in our case have to educate yourself on processes and have some heated conversations with the people who place the obstacles and hoops for you.Experience would suggest these people may frustrate the life out of you but they are not the enemy, they are trying to do the best job usually with hands tied by local authority budget restraints so remember to be firm but civil.

Budget problems are not your immediate problem doing the best for your child is the only priority to consider; never be rail-roaded or pressurised by authority as legally from age of 5 your child is entitled to full time education and no one knows your child’s needs like you do. If they can not provide the correct environment for your child they are failing they’re responsibility plain and simple and don’t be afraid to be vocal with that opinion.

So once you have got through the stress of the above its all plain sailing right? WRONG the world won’t stop turning the mortgage still needs paying, the car still needs tyres and the washing machine will still break down when you’ve no money. In short ASD is probably the biggest daily challenge the household will encounter but what happens to the family unit when bills need to be met?

In a nut shell it is very difficult to get a balance, if one parent works extra to make ends meet and provide a home that parent then misses out on the parental bond with the kids and the parent who takes on the responsibility of caring for the kids can often feel isolated and probably stir crazy!

The stress on the strongest of relationships and family units will become head splitting at times and unless you’ve an extraordinary support network nights out and long meals with adult conversation will seem like distant memories; even family days out are tough usually requiring military precision!

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Most days I work late and am either greeted by a happy little boy clutching a Smyth’s catalogue and his trainers or a rat bag tired and screaming but usually still wanting to go out in the car; back to experience tells me take him out to the park, shops, beach wherever it stops the melt down and the fresh air usually guarantees no 2 am wake up with lights on trampolining on your head. 6 hours exhausted sleep is better than an hour here and there and the time spent what ever we do even after a hard day is priceless even precious and it de-stresses me from the work environment.

There is no manual to parent a child let alone an autistic child but the same principles apply the more you put in the more you get back; your child may prefer their own company but don’t let that stop you get on the floor and interact, get on the zip wire, slide or swing (even the bloody North Sea as happens here) to share experiences.

A happy child will interact more positively in my opinion and when you learn what makes them happy it’s great to use as a distraction to nip a potential meltdown in the bud.

So summarising be civil,firm,tired,skint, stressed, thoughtful of your partners situation but most of all try to smile and interact with your child.

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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. 

Communication frustration 

How do you communicate with a non verbal child?


Reilly understands pretty much everything we say to him. He doesn’t always acknowledge that we’ve spoken but I’m pretty certain he’s heard us none the less.

I’m astounded at how well we manage to be honest, we always eventually seem to get to where we want to be and to what he needs. Probably through years of just knowing Reilly and what makes him tick. Reilly doesn’t nod or shake his head either, these tiny gestures alone could help us 1000%.  It is heartbreaking though during a meltdown or when he is unwell to not be able to comprehend what is happening or how to fix it. Not knowing how his day at school was or whether he’s not comfortable around someone and we can’t put it right.

Reillys preferred method of communicating at the moment is to take you by the hand to whatever he wants. If he’s not happy he screams, cries and throws things. If he’s happy you just know it, it’s there to see he’s cuddley, smiley and an absolute joy.

We tried makaton like Mr Tumble. We attended sessions to learn how to do it. Simple hand signs that eventually Reilly would pick up on and use spontaneously. Problem was holding Reillys eye contact long enough for it to click.

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We have used this book More Than Words  (pricey but worth it and will resell) for over a year now to help understand the different types of communication problems and the exercises they recommend.  Its a very good book very easy to read with lots of diagrams and clear instruction.

 

 

PECS (picture exchange communication system) is what we are trying to use at the moment. I bought hundreds of pictures ready laminated from eBay. I attached magnets to the back of the pictures that I thought Reilly would use the most and attached them to a magnetic board. Makes me sound like a blue peter presenter doesn’t it? Far from it, the pictures stay on the board for approximately 1 hour on a good day. Reilly likes to take them all off and scatter them about the house.
PECS does work though and we will stick with it, when he is bored he brings the bus and slide pictures which usually means he wants to go to soft play. He will bring the picture of some chicken nuggets when he wants a trip to McDonald’s but that’s about it for now.  I keep photographs on my phone of places we may visit to limit his anxiety when we go out in the car.  It is important that he understands where we are headed to make him more comfortable and eliminate fear.

 

This is an example of a good PECS board, how it should look.
this however is how ours looks today with added scribbles

Something we were encouraged to do is put the fridge in our garage which is locked so instead of Reilly being able to just go and get what he needs he must communicate to tell us to open the garage door, this would be a winner if Reilly wasn’t so fiercely independent. He would rather create a climbing frame to reach the lock. He’ll pile pans on top of the washing basket or dining room chairs to gain some height. All of our dining chairs now live in the garage and only come out once a year at Christmas.

Other than that it’s guess work and trial and error. Frustration rules the day most of the time. We have locks on the outside of the bathroom to stop Reilly getting in. It’s really difficult to make him understand that yes Lightning McQueen might need a car wash but leaving the plug in and running water continuously is not how it’s done. I could switch the tap off 200 times and he would never tire of turning it back on.

The biggest problem we have at the moment with communication is sneezing and coughing. If I cough Reilly will attack me like a banshee he pulls my hair, hits and scratches. He has had me in tears on occasions.  He’s not that bothered about other people doing it although he has in the past hit me for someone else’s cough. We’ve tried warning him that it’s coming, tried turning it into a game, made songs about it absolutely nothing works, it devastates him. Maybe it’s because some autistic people feel pain attached to sounds, maybe he has misophonia an extreme emotional response to specific sounds.We just don’t know he can’t tell us and its heartbreaking!

This for me is the most difficult part of Reilly’s autism. I cannot bare the thought that we may never have a conversation but I am hopeful that he will talk, it’s not uncommon for children with autism not to talk until later years.  Just try for one day to imagine you cannot communicate with your child and think about how you would get on. I would predict tantrums and frustration from both parent and child because it’s hard! It’s something that I never had to give a seconds thought to with things 1 & 2, I just took it for granted like most of us do.  I’d love to see the day makaton and sign language are brought into the curriculum so all our children can communicate ❤️

not sure whether this is good or bad 🙈 can you guess where it is?