Autism Awareness Week is on it’s way again. A chance to make some noise. Given we are still in the midst of a pandemic our usual plans to get into schools with a bit of education are out of the window.
We decided that our play Really Reilly which was due to roll out into schools in 2020 could be recorded and then distributed to schools to play safely, adhering to the covid guidelines within bubbles in classrooms. No need to gather in halls to watch a performance.
What’s it about? Really Reilly is a play designed for younger primary school children. It follows autistic character Reilly and looks at some of the reasons he may be different to his classmates and how different is ok.
In past showings I think it’s not only the children who have learned from the experience but also the teachers. When we show that Reilly wants to sit under the table for storytime but the teacher won’t start until he sits smart on the carpet with the rest of the children. The other children get impatient with him and he feels awful. What we clearly communicate is its not the end of the world that a child is more comfortable in a different position, this Reilly hates the feel of the carpet and doesn’t want to sit on it because it feels like a thousand pins. It’s not straight forward. The child may not be able to communicate that well. Little tweaks can make a massive difference to children like Reilly.
It shows the playground dynamics, why he flaps his hands and how inclusion is important even though it may not be acted upon but it can mean the absolute world to be asked.
By the end of the play the children, teachers, lunchtime staff etc got from exclaiming OH REALLY REILLY! to ohhhhhh Really Reilly – now I get it.
Drama is an incredible catalyst for learning. The children absorb when they enjoy learning. Drama does exactly that.
We hope that children will have more understanding and empathy around not just autism but any type of diversity. This will spill out into parks at weekends, family holidays around the pool, shoppers in the supermarket, friends, neighbours or simply a passenger on the bus. It’s a strong message delivered in a engaging way.
In an ideal world I would like every primary school to work with us and really make a difference this year for autism awareness week. Let’s make it about understanding and acceptance that it’s ok to be different.
If you feel you child isn’t understood in mainstream school please recommend us, if you are a proactive school and want to host Really Reilly please do get in touch at firstname.lastname@example.org
Four words. Four very simple words with a massive impact.
There is a line in the play The Life of Reilly which is delivered by autistic actor Scott and it says “They say words behind my back that move to my heart and break it”. It’s about thoughtless people, I met some of those today.
The holidays are hard for us, when I say us I think it’s safe to say I speak for many. We are 4 weeks into the holidays the kids are out of routine and back to school anxiety is taking root. I’ve given my Katniss salute to a few when I’ve seen them out and about. Just so they know I know, I get it.
Reilly made it really clear today he wanted to get the bus into Town so that’s exactly what we did. I was a bit nervous about it as sometimes Reilly will want a certain registration plate rather than bus number, I am many things but a conjurer I am not. Anyway all good a double decker came immediately and we had a lovely ride in.
He has a route he takes every time and that’s through M & S and then straight to Fenwicks or HMV. Today was HMV for a new DVD. I should really take a camping chair as we could be there all day while he looks at all the covers. He bought Thomas Trouble on the Tracks then led the way back to the Haymarket. No stopping for an ice cream at Mark Toneys or Fenwicks so knew something wasn’t quite right.
A doughnut from Greggs and we got back on the bus. He didn’t want to get on it but seeing as I don’t live in Whitley Bay his choice was out.
It was horrific. From the second the bus moved he screamed literally til he couldn’t breathe. He was shouting go back and clawing at his own skin. He is covered in scratches. Now I knew if I turned around I would see, best case scenario would be 2 different types of reaction. Half bus thinking ah poor woman and child other half wish sh’d shut him up. Worst case would be a bus full of the latter.
A man and woman late 60s ish were sat in the seat behind me. I could hear moaning and would occasionally see her hands go up to her ears. Did I turn around and boot her? No maybe she had sensory issues, maybe there’s more to her story. So I persevered with Reilly. I cuddled him, I kissed his scratches, I explained we had to go home. Not once did I raise my voice or get angry with him. He’s non verbal this is his communication. Me getting angry would achieve nothing. In this situation I have to his anchor and safety net. I could almost hear them willing me to give him a smack.
Worst 25 mins Ive ever had with him. I was sweating, stressed and on the verge of tears. As the couple got off they avoided my eye contact and I heard her say to the driver in a snidey tone “THANK GOD FOR THAT!” Not satisfied that she was getting off the bus and out of the situation but wanting to drum up some comrades of hate, which she didn’t get. one lady said to me some people just don’t get it, they are awful and she’s right.
I did my best for my boy that’s all I can do. Everyone else has the luxury of moving their seat. What am I supposed to do? Get off?
I’ll tell you what YOU can do in this scenario.
Don’t roll your eyes to the person across the way.
Don’t do massive loud exhales of breath behind my head you might lose your lips.
Say things like I know there’s maybe nothing I can do but let me know if I can.
Be a friend. A knowing smile is enough to top up our batteries.
Don’t judge. This isn’t bad parenting.
If you get off at the same stop offer to carry a bag, ring someone. Our hands are usually full.
Move your seat. If it’s too much I understand honest I do.
Give us a break.
I did mouth out the window WTF is wrong with you which she saw. She just looked at me disgusted. I’m over it now but for the love of Tom people pack it in!
When I eventually got him home I tried to work out what happened. I know he wanted to go back to town and kept handing me my bag. He took my phone and typed this ….
He had changed his mind about the DVD he bought in HMV. Honestly I’m heartbroken. The meltdown was born through pure frustration because he couldn’t tell me. I had put my phone away to hold him on the bus. My little lad and what he does every day deserves a medal of Olympic standard.
I put him in the car, drove to HMV metro centre and changed his DVD. We went to the Disney shop and the lady on the till recognised him immediately from his blog and Facebook which was lovely. We had a Burger King and shoved some wool up the sucker in the build a bear factory (always a favourite).
Up yours old cow on the bus. Maybe some education from playing outside your house maybe useful?
To say I am excited is understatement of the century.
I was approached by a lady called Alison Stanley in April when I began writing this blog. Alison from Red Diamond Theatre wanted to talk about taking The Life of Reilly to the stage! She had already been working on a play about an autistic adult looking back over his life from a small child and how he handled the scenarios that moulded his life. I imagine it to be bittersweet and will touch base with every emotion in the audience.
The young Reilly will be based on my very own little man and I’ve thoroughly enjoyed sharing some of his best moments with her. Some funny, some heartbreaking. Alison is already well versed in everything autism as her own son is also on the spectrum, not the same as Reilly; quite the opposite in fact but like we always say you meet one child with autism you’ve met one child with autism because they are all unique.
Autism has never been more in the public eye than it is now and every new project gets people talking which in turn leads to a greater understanding and an easier life for autistic people and their parents. The A Word has done wonders. All of my friends and family watched it, it opened dialogue that they would never have dreamed to mention before. They get the stress and the utter desperation for normality portrayed by Alison Joes Mum and I have found they are kinder and a little more forgiving than before.
A play about autism would have me jumping for joy at the best of times but a play with traits of Reilly is just incredible. Alison has had great success in the past with plays at the Theatre Royal and the Edinburgh Fringe which were greatly received! I cannot wait to see the results for The Life of Reilly.
I hope you will all support it when the time comes ❤️
As promised I said I would update on the situation with Manor Walks. North East Autism Society (NEAS) were in the centre this week and delivered autism training to representatives from New Look, O’Briens, Management, parking and security.
I also met its Sarah from Manor Walks and listened to plans for an awareness day throughout Manor Walks to provide shoppers with valuable information about autism and how they can help. Lesley Cole from Autism Northumberland will help them facilitate this and I think it’s a great first step for some shoppers to gain some much needed understanding.
We also discussed the autism friendly shopping times and a quiet area when things are just too much.
I put forward the idea about the shopping trollies for larger children. I decided to test the one in Asda out tonight with Reilly. Why I do this to myself when I’ve been up since 3.30am I’ll never know 😁
As you can see he’s thrilled to be in there 🙈. It was really difficult to push and a spot of WD40 wouldn’t go a miss. The basket at the front is really quite small so no weekly shops with this one. If however Reilly had an iPad or similar I think he would have sat quite nicely, the seat is huge. He had bigger fish to fry today though with the lure of the kinder egg stand and wanted OUT ASAP. There were a few Judge Judys who had a good stare at Reilly in the new trolley but as always I completely ignored it, 3 stares though and I’ll clip your ankles with it.
We received £100 of vouchers from the security firm by way of apology for the situation with the security guard and tonight he bagged himself a dolly with a bath, a crane, a rapunzel play dough set and a paw patrol action dog . No gender discrimation with Reilly’s toys. So no complaints from him tonight fingers, legs and toes crossed for an early night.
Reilly has decided over the last few weeks he will simply not tolerate a nappy unless it has a lion on it. He wears pampers nappies that come in 2 designs in each pack, one is a lion the other is a giraffe.
I cannot see anything offensive about the giraffe but it sure as hell isn’t going near Reillys butt. He hides them, puts them in the bin, in the tumble dryer etc. If he wakes up and I’ve had the audacity to sneak one on him while he’s asleep he removes it pronto and throws it across the floor.
This has resulted in a huge stockpile of 6+ pampers giraffes. Anyone fancy a swop I’ll do two giraffes for one lion?
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.
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.
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.
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.
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.
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.
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.
We have used this bookMore 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.
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 ❤️
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.
Every child is entitled to an education in the UK. It is taken for granted that your child will attend nursery and then progress usually to their local primary, for some of us we’re not so lucky.
Before Reilly turned 1 we registered him with our local mainstream schools nursery, it’s common practice, get their names down to make sure they have a place. Months passed and we eventually got a letter to go and see the nursery and meet the teachers. July 2014 Reilly was about to turn 3 one of the youngest in his year. I knew the nursery and the teachers well I’d lived in the schools grounds from the age of 11 as my dad was the caretaker and things 1 & 2 both had attended and loved it.
I’d taken Reilly to a playgroup at the school a few times he was reluctant to go in, stuck to me like glue and stood at the door crying for the small amount of time we stayed. Obviously I was given the old chestnut advice “make him stay, he’ll not learn if you take him out” I had the looks when he wouldn’t sit at the table for snack time. The look that says look at my child sitting perfectly eating his apple while yours upsets him by crying and making a scene. The look that if its shot at me now is met with defensive confrontation usually followed by the word off. I didn’t realise at this point how situations like this hurt Reilly. Too many children, eating with others, noise, etc all magnified to where it’s just too much. I decided after 3 sessions I wouldn’t be back.
I told the nursery teachers at the visit that I wasn’t sure that mainstream nursery was right for Reilly he was still very young and couldn’t talk but they hadn’t met him and assumed he’d be fine.
I was right he wasn’t fine. Reilly was never going to sit on the carpet for stories and drink his milk, he didn’t understand the rule of 3 in an area at a time, he was still in nappies and he couldn’t bear to be away from me. Between myself, the teachers and Reillys speech and language therapist we decided he couldn’t remain there and I was advised to try a sure start nursery a couple of miles up the road.
I would get the bus with Reilly to the nursery in Wideopen, this in itself was a task and a half. Some times he refused to walk the ten minutes to the bus stop, choosing instead to lie down and scream because someone had passed on a bike or a dog had barked. If the wrong bus came first and he couldn’t get on it there would be another meltdown which would result in him trying to run off onto the main road, he has no fear or traffic sense whatsoever. We’d arrive stressed then I’d sit in the office while they tried to settle him in, it was hard work and took a few weeks but through the staffs hard work and perseverance I actually took him in one day and he pushed me out the door and shut it behind me. I cried all the way back to the bus stop. A mixture of happiness and relief that he had shown a little bit of independence, I could see progression instead of regression. I would sit in a cafe round the corner just in case they needed me instead of going home.
Months passed and it became the norm for Reilly he loved it and he loved the staff. Transport was still an issue but we did it. Every time we left nursery we would go into the co-op go to the same aisles, put the same things in the basket and sit on the wall and wait for our bus. God forbid they didn’t have what he was looking for (6 muller corners, a kinder egg and a flake ice cream every single time). I was benefitting from the few hours a week free time I had, I was worrying less about him in nursery and other than the constant assessments and then his diagnosis we were OK. We knew he needed a special needs school but as per usual there were no spaces, full up with a waiting list.
Then we got the letter, the letter to advise us his nursery would be closing due to a shakeup within North Tyneside Council. We had it planned we would withhold Reilly from starting reception for one year with him being a summer baby and let him do another year at nursery, give him a chance to socialise more maybe even gain some speech. No that wasn’t going to happen. Upsetting an autistic child’s routine is devastating for them and this was about as bad as it could get.
Meetings were quickly called for all of the professionals dealing with Reilly, everyone agreed a special needs school was needed but he must be put to a panel to decide, this panel was months away.
Where the hell was Reilly going to school in September? No one knew.
We eventually received the news after numerous irate emails and phone calls that Reilly had been to panel that his statement of needs was with a special needs school but unfortunately they were all full. Tears, anger, frustration you name it we felt it. The only option was to keep Reilly at home or send him back to our mainstream local school, the one that wasn’t right for him before. If we kept him at home he would not be the councils main concern, if we sent him and it was a problem then he would be dealt with quicker. A ridiculous waste of time and energy that is extremely stressful for the child and the parents but that’s how it works. He was given a 1-2-1 assistant who was brilliant with him but by god he had her life! I actually felt sorry for her she must have done some miles chasing him. The school handled it brilliantly and were really helpful in getting Reilly moved on to which I will always be grateful for.
To cut a really long story short Reilly started Beacon Hill School in October last year, we were very vocal constantly on the phone for updates and it worked. Small classes, sensory rooms, skilled special needs teachers; communication systems and most importantly other autistic children. I won’t lie when myself and Shane went to look around all I thought was Reilly doesn’t need to be here this is a REALLY special school for complex kids but the truth is that is exactly where he needs to be. He is transported there and back everyday by taxi and an escort, some days he likes this others not so much! The first week I cried the second I did a little jig back up the hallway to make a cup of tea. This school is bringing him on leaps and bounds, teachers are amazing and so are the kids.
My child is entitled to education just like any other. I did not expect to have to fight to get him there through a system that is slow and flawed. He is different not less and he won’t be failed.
UPDATE: ‘ recommended school was always Benton Dene. This is the school he attends now and it is absolutely perfect for him. we have some amazing schools in our local area. There just aren’t enough of them.