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. 

The Anxiety Society 


Before Reilly was born I was already a part of the anxiety society. That club that no one asks to join and you can’t terminate the membership, a bit like those gyms you join on January the 2nd and continue to pay for the rest of your days.

 I’ve always had spells of anxiety from around 18 but it was never a constant, when I went on holiday I’d want to come home, I’d get that jelly legged feeling and feel dizzy until I was either a) drunk or b) came home, that kind of thing.

I lost my brother aged 32 in 2003 to a heart condition which devastated us as a family, it was out of the blue, sudden and excruciating. Still is.

Thing 2

After thing 2 was born in 2006 I suffered post natal depression (PND) of epic proportions. If there had been space I would have gone into a unit but there wasn’t so myself and Things 1 & 2 moved back to my parents house where I could start medication, take sleeping tablets and actually rest.  I have no doubts without my parents and some great help from my neighbours and a couple of friends I would not have coped alone and I’m forever thankful for their help to this day. There were contributing factors to the PND. Thing 2 had a  condition called pyloric stenosis which meant he was sick constantly not just baby sick but projectile sometimes 10-15 times a day. I couldn’t leave the house without numerous sets of clothing and no one was taking me seriously and I was palmed off as an overprotective mother.  When he was 2 weeks old I received the news that an old friend had horrifically murdered his partner, my god-daughter, her brother and uncle. This man had been in my home, bought Christmas presents for Thing 1 and I was devastated and disgusted that he’d been near my child. This is no great secret revalation I have done newspaper articles to help others desperately looking for answers around PND in the past.

6 weeks later Thing 2 had surgery on Christmas Eve and I spent Christmas Day sat in the cafe at the RVI eating chips and gravy while wondering how close the nearest exit was, whether someone could remove the elephant crushing my chest and why me? I crashed spectacularly.

That’s the short version. Not surprising I’ve struggled I’ve had my share of shitty cards dealt but I’ll not bore you with the rest.  There’s other things but these are the contributing factors as far as I am concerned. I’ve managed to handle my depression and anxiety pretty well in recent years. For a long time it ruled me, I wouldn’t use public transport alone, go anywhere with friends and gave up my job but a chance meeting with an old school friend who later became my husband in 2009 was my turning point. He has had tragedy in his life too but that’s for him to talk about.IMG_0003

We supported each other , we got each other. I remember being terrified on my wedding day that I’d have a massive panic attack saying my vows and ruin the whole day. I didn’t though it was perfect. I’m still prone to catastrophising for example book a holiday see flashes of plane crashes, lose Reilly for 3 seconds = he’s been abducted then I ruminate about it and end up in a right tizzy, building a cycle of fear and anxiety.

Reilly came along in 2011, 7lb 7.5 oz of gorgeousness and it was Love at first sight. I was terrified right through my pregnancy of PND returning. It didn’t, don’t get me wrong the anxiety was still there but I think that’s my life long buddy and he doesn’t seem to be going anywhere so I crack on and deal best I can. Autism came along though quite unexpectantly, it wasn’t anything I had given any consideration and I wasn’t prepared for its effects.

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Reilly

I suppose the point to this post is that the ‘system’ the parents and children have to go through to have their child diagnosed and get them the right help is nothing short of appalling, I cannot speak for all but I speak for many. I was already capable of slipping into dark places I didn’t need a push in that direction. I have never experienced lows like the ones we faced. It can cause problems with your marriage, work, friends and family. My beautiful Thing 2 did not want to sleep at home as Reilly was so wild during the night and could scream none stop for 4 hours which was causing him anxiety at just 8 years old. Our family unit was slipping apart and it’s still not fully fixed, it’s better but it’s still got cracks.  

Being part of the anxiety society I knew I had to become incredibly strong, official meetings sometimes alone and making decisions were something I cried away from but now it was impossible. I still to this day clock the exits and windows in case I need to get out, fleeing that hot, dizzy unstable feeling that comes with a panic attack. I’ve never had to leave meeting but the fear that I will is always there.

During our experience in finding Reilly a school I don’t know how many occasions we were told ‘you must play the game’ to get the help needed. A game where only the loudest, assertive parents get anywhere quickly. I dread to think how many mild-mannered people are being palmed off to this day. Children not in the right learning environments because there’s no provision available resulting in more meltdowns, more stress at home and more families struggling.  I already felt like I was failing Reilly unable to calm his meltdowns, get him to sleep etc without now failing his future and a right to an education that is right for him. We fought, we read guides on the special needs education system and became armed with knowledge. Having a child with any disability is stressful enough without trying to navigate a minefield of sometimes a load misinformation. Too many tears have been spilled over ‘the system’ not just by us, by many.

I still take antidepressants I think I always will, I can’t polish a turd here; it’s not the best but I attend anxiety workshops when I can and I practice mindfulness. I run an extremely successful charity North East Hearts with Goals with my sister in law set up in memory of my brother. Our charity has impacted on 2 gentleman’s lives being saved which is an amazing achievement and an incredible legacy. I’ve given tv and radio interviews and a presentation in front of hundreds. I never dreamed any of this would be possible. I’ve learned to handle it better, it’s never gone away but I can’t sit back and wait for it to disappear because chances are it won’t.

I still check in at my anxiety society every single day, it’s like a second home! Typical day consists of :

  • Will things 2 resent thing 3 for taking so much of my time away?
  • Who will look after them if we are in an accident?
  • Is his transport driver an (insert horror thought here)
  • Will he speak?
  • Will he live on his own?
  • Why won’t he eat anything but chicken nuggets and ice cream?

And so on ….

To negotiate the special needs maze positivity is crucial, I hate negativity and there’s no place for it in my life. Don’t get me wrong we’re still lost but I think we’re headed in the right direction.  My kids are amazing and all 3 of them and I’m sure will achieve whatever it is they desire and we will endeavor to help every step of the way. I would love to see more help and a fairer, faster system for these families from identification and diagnosis right through to living as independent adults.

Autism acceptance is key. It’s here, it’s not going anywhere it’s just a different way of thinking. Remember when you see that frazzled parent sobbing with a child starfished probably with no pants on that chances are they’ve not slept for a year and are under extreme pressure in every aspect of their life.

Be kind as always.

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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.

mtw

 

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?

 

I am jealous. There I said it. 

This post has done the rounds a lot in the last 2 years about how jealous I was of everyday things.  Ive just read through them again and felt I needed to update them (in brackets and bold).  Amazing how your outlook can change, i’m always learning.  I love this boy to bits.

I’m jealous. There I said it.

I’m jealous of other families that don’t struggle like we do – I am jealous, I’m not proud of it. I am a green eyed monster. There are lots of things that make me jealous things that you probably haven’t given a thought to.

  • I’m jealous that you can go food shopping with your child and not have to dump your trolley and get them out because muller have changed their packaging or an unexpected tannoy announcement causes a meltdown. (2017 edit – I hate shopping anyway, online is the way to go).
  • (2018 edit – shopping is pants, still)
  • I’m jealous that your child wants to put carrots out for Rudolf, watch Elf and get excited at Christmas.
  • (2017 edit – Tricky one.  I think I miss tradition. Alex and Ellis are too old and I miss it.  Reilly does not. Me me me lol.  I still watch Elf, I still put the carrots out, the reindeer dust might land on top of the wheely bin but who honestly gives a f”ck?) Santa still gets here.
  • (2018 edit – haha! Up yours Reilly is loving it! We’ve got a plate for mince pies, he’s bought his carrots and we are having it this year!) .
  • I’m jealous you can stroke your child’s hair and take him for a haircut.
  • (2017 edit – I stroke it in his sleep, his hair is long, no biggy).
  • (2018 edit – after his hair tatting like a spaniels and his cutting his fringe his hair is now shorter. I can stroke it slightly more. Me me me).
  • I’m jealous that going on holiday for us means 6 months of displaying photographs as social stories of aeroplane steps, engines, seat belts and still having no clue whether he understands it all or not.
  • (2017 edit – there are worse things I could be doing at least we are doing it).
  • (2018 edit – been and talked to the airport about becoming more user friendly with ideas in the pipeline. We look at holidays daily on the internet and trust me no prep is required he loves it).
  • I’m jealous that your child does the actions to Incey wincey spider and sings along.
  • (2017 – never liked nursery rhymes anyway, usually creepy full of stories of wronguns).
  • (2018 edit – nursery rhymes are still crap and Reilly says moo and meows on old MacDonald’s farm. That’s enough for me).
  • I’m jealous you go to bed and sleep for more than four hours.
  • (2017 edit – Melatonin saved my life, true story). 
  • (2018 edit – melatonin continues to keep me and Reilly on an even keel).
  • I’m jealous that you can give your child food that is not just coloured beige.
  • (2017 edit – beige is nice, beige is popular).
  • (2018 edit – he now eats pizza and the yellow bits off haribo eggs, he’s healthy, it’s no biggy).
  • Im jealous of your play dates.
  • ( 2017 edit – sometimes – but I like it just me and him)
  • (2018 edit – still like our own company, our rules, our way, we leave when we want).

  • I’m jealous of family trips to the cinema. (2017 edit – £50 for a family trip and counting – you can keep it!)
  • 4 attempts at Peter Rabbit, still too expensive you can keep it).
  • I’m jealous that when your child is ill you can fix it and know what is wrong or where it hurts.
  • (2017 edit – STILL JEALOUS)
  • (2018 edit – still jealous)
  • I’m jealous that any snippet of spare time I get to spend with my husband is spent discussing worries.
  • (2017 edit – everyone has problems maybe thats what you do to?)
  • (2018 edit – I am a worrier, if it wasn’t Reilly it would be the river in York for my oldest at Uni, bullying for my middle child, health, money list is endless).
  • I’m jealous I don’t have time for friends. (2017 edit – YUP but i’m trying)
  • (2018 edit – must make more effort).
  • I’m jealous that your child can tell you they love you.
  • (2017 edit – He loves me I know it, I just haven’t heard it, he traces my face with the tip of his nose and it says it all).
  • (2018 edit – he signs it to me. I feel this is extra special ❤️

But you know what I am also?

Proud, extremely proud.

Have you any idea how hard it is for him to function in this chaotic world? He has the determination of 10 men, the independence of 20 and the stamina of 100.

I’m proud of every tiny step he takes and celebrate each one. Be it touching a piece of fruit, making a new sound or completing a 300 piece jigsaw!.

I’m proud that he is loving.

I’m proud that he is smart.

I’m proud of how hard he tries.

I have 3 beautiful boys and I am incredibly lucky. There are people wishing they had what we have but just sometimes I just can’t keep that green eyed monster at bay.

(Green eyed monster is kept at bay most days I am happy to update).

I feel sorry for those who don’t have a Reilly in their life, amazing what can change in a year.

Another year down more lessons learned, more understanding of my Reilly.

Diagnosis day

Even though I knew Reilly was autistic I always held onto a tiny thread of hope that he wasn’t   I didn’t want my boy to struggle you see,  I wanted him to be accepted; I wanted his biggest worry to be what was in his packed lunch box.

The day of his diagnosis came in March 2015.  Myself, Shane and Reilly had to attend a meeting with our speech & language therapist and a pediatrician who had never met Reilly before.  This made me a bit nervous how could she diagnose my child in a 2 hour meeting?.

The drive to the centre was awkward.  Reilly kicking off because we were driving down a road that he hadn’t been down before and Shane & I mostly in silence, broken every now and again with a heavy tension filled sigh.

We arrived to cheery faces and a room full of toys, so far so good.  The first part was mostly play based, they played and interacted with Reilly best they could.  We were then questioned about Reilly’s behaviour.  Every answer we gave terrified we’d given the wrong one.  Had we downplayed some of it? probably.  It’s really easy to talk in detail about how great your children are at different tasks.  It is not so easy to talk about things they struggle with and that’s what we had to do. I felt disloyal to Reilly, I felt like I had failed him.

Next we were taken to a small room where Reilly was stripped down to his nappy and a UV light was used to scan him for marks on his skin, they were looking for Tuberous Sclerosis, 50% of children with Tuberous Sclerosis go on to develop ASD.  I had no idea it even existed. It sounded terrifying, life threatening and all I needed to know was that he didn’t have any marks.  He didn’t.

Off we went to wait for them to deliberate and deliver their verdict.  20 minutes felt like 3 hours with constant anxiety and on the edge of a full-blown panic attack.

As we took our seats back in the pediatricians office where there was no beating around the bush, she was direct and she was honest.  Reilly was autistic.  No more might be, maybe, could be – he was.  Even though I was expecting this it felt like someone was standing on my heart.  I could barely breathe and I wanted to run. I wanted out of the office and back home to this morning with the maybe’s and could be’s.

We talked for a bit about how we felt but to be honest I cannot remember what was said.   We left with a pile of literature on help groups and activity sessions.  Buckled Reilly into his car seat as we always did and sat in silence for a bit.  I wanted to throw up, I had the shakes and I know Shane felt exactly the same.  The fear was real, I cannot stress that enough because it is genuine fear of the unknown.  NOBODY wants their child to struggle, they want the norm because its easier; they go to the local school around the corner for nursery and leave to go to high school at the end of year 6, they make lifelong friends; the same.

We came home and told his brothers of his diagnosis.  It made no difference to them whatsoever.  They already knew.   Everybody knew.

I should mention prior to this meeting reports were submitted to help with his diagnosis by his nursery, health visitor, speech & language, education psychologists, health visitors and portage. All unanimous in their verdict.  It took approximately 2 years to get it and the equivalent of the encyclopedia britannica in paperwork.  We are lucky, some families are fighting to get a diagnosis years down the line, it can feel like looking for the holy grail at times.   It is hard and in most cases you must fight for help every step of the way, be vocal and keep at them. If you don’t shout you won’t be heard.

So that’s it. That was diagnosis day.  It threw a major curve ball but it has opened a few doors for us and enabled us to sketch plans for Reilly’s education.

The best piece of advice we had was from my sister in law Kelly who I quote “Is he going to die from it? No crack on then there are others in worse positions” and she was right. He’s incredible.

 He is funny. He is super bright and he is autistic.  He is Reilly and we love him.IMG_6335