Living in a city where Newcastle United is the heart beat of the city you’d imagine seeing things as black and white would be a good thing right? In a professional capacity I hate grey areas, it’s a recipe for disaster so at times I suppose we all like things to be as simple as black or white.
Add a 4 year old non verbal autistic lad into this world and the world of black or white and no grey areas becomes incredibly difficult and tbh at times unbearable to the point you could scream. Believe me I have screamed and it’s also reduced this 6ft, 16 stone skin head to tears on occasion.
Parenting a non verbal autistic child is tough and stressful doesn’t come close at the moment, on the flip side imagine being a 4 year old with little way of communicating their needs or even worse fears? Imagine now if you would the distress.
Every time Reilly melts down breaks my heart, why? It’s not the tears or the noise as every kid when they are hurt or upset will cry and scream. What breaks my heart is this little boy in front of me is either so anxious, scared, confused or worse still Ill and he can’t tell us and we can’t explain to him like we can with our other kids. Black or white now doesn’t seem as appealing to me; I’d kill for Reilly to have a few grey areas to ease the complicated world he finds himself in.
So sometimes when I think I have had a shitty day at work this little man of ours puts everything into perspective; you might think to yourself I’m fed up of this or that but at least we have the ability to rationalise, reflect and communicate our thoughts and objections.
This non verbal autistic kid doesn’t have these skills sets to ease the anxieties, stresses and make sense of the world they live in; so Black and White anyone? Not me for one I’d take grey any day of the week.
What can grandparents do to help their family with an autistic child?
Lots of grandparents feel a bit hopeless when a child with autism comes along. They’ve had brilliant relationships with the other grandchildren but this one needs a little more work. This child doesn’t want nursery rhymes, books or chocolate. I’ve found it’s always parents that are targeted with the awareness and the sessions to understand autism and it’s generally upto the parents to pass that knowledge along. But who is it who cares for the children when parents have to work etc. You find with an autistic child people aren’t exactly throwing themselves at your door offering their services.
I have one piece of advice for grandparents stop judging, like really stop.
Drop in on your son or daughter and there’s a pile of dishes on the bench, the washing hasn’t been done, the kids are having chicken nuggets for the 4th time this week, there’s toys tipped out of boxes in the living room and the kids have got odd socks on. The LAST thing they need to see is your judgey face and a sly tut. First world problems? – I don’t think so.
You see snippets of their stressful lives. Often running on minimum sleep and maximum anxiety. Marital problems can creep in and siblings crave more attention. If you need to pick a battle I guarantee the dishes and washing will not win. Autism parents can be burning the candle at both ends can’t sleep, won’t sleep being a major issue (if your little cherub allows of course in that 3 hour sleep window). Exhausted but a mind full of worry waiting on their pillow. Will he go to school tomorrow?, will he have a meltdown in the taxi?, is he going to eat? Will he sleep more than 3 hours? etc who do we have appointments with this week paediatrician, speech and language, educational psychologist then a little skip forward to what if I die tomorrow who will care for him, this plays on a loop every single night, not just mine but also my husbands.
You can help though.
Mow that lawn, put the washing through, offer your babysitting services even if it’s just for an hour, make them a pie and drop it in for tea. Little things.
I’m very lucky that my parents pitch in. My dad takes Reilly for walks and let’s us go for tea sometimes and my Mam does housey things to help, she’s still gets very upset during meltdowns and doesn’t look after Reilly alone, she’s pretty much terrified of him. Rightly so just 2 days ago he was lining his paddling pool up underneath the upstairs bathroom window. He never got the opportunity as the window is locked but he literally has no fear of anything other than the stampede on The Lion King.
All hands need to be on deck regardless of whether that deck is strewn with Thomas the Tank toys and the missing odd socks. Team work is essential. You must remember that lots of parents feel like they are failing without anyone else’s judgement. We are our own worst critics and trust me we don’t critique lightly.
Nickname for today : Stig (of the dump)
Grandparents all is not lost! watch this space for more info regarding grandparents and autism coming soon. Reilly at his Grandad’s. Nutella on toast every night straight from school.
What an absolute stinker of a day! Reilly’s behavior today has been just short of horrendous. Up at 6am which was a bonus as we were allowed to play tents for an hour before actually having to come downstairs.
The only peace today was when Reilly was eating an ice-cream, rest of the time he was like an angry whirlwind.
Today he doesn’t want to be anyone’s friend.
He has hit Ellis numerous times for coughing.
pulled my hair for offering help with Finn McMissile.
Thrown my candles and hurricane jars off the shelves.
pulled a drainer full of dishes onto our waiting to be tiled kitchen floor which all smashed to smithereens and then proceeded to try and stand on the remains.
Flooded the bathroom floor as stupid me didn’t turn the stopcock off when the washer finished.
Had a meltdown for 45 minutes because he couldn’t get the shed door open.
Pulled over my recycling bin in protest, scattering bottles everywhere (I don’t drink by the way but that could change very soon) and sat on the top like the Lion King.
Took huge offence at me applying factor 50 plus suncream and covered himself in washing up liquid instead.
My dad took pity and ushered me and Shane out for something to eat while Reilly had a snooze but then HAD to phone for us to come back as he had the audacity to try and put on a giraffe instead of a lion. (If that means nothing read back on the lion and the giraffe post).
He was still crying when we got home to which Shane bundled him in the car with his bucket and spade to the beach. and breathe.
Shane asked do you want to come with us? Hang on I’ll just think about that for 0.025 seconds. NO, no I don’t, drive away quickly and come back when all is calm (preferably 10.30pm and ready for bed 🙂 ). I have said FFS far too many times today and not even under my breath and I’m no Sweary Mary.
Does that make me a bad mother? Does it hell. It’s ok to say your kids get right on your wick sometimes. I get on his too.
In fact today everyone gets on my wick so here’s to a nicer tomorrow.
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?
Reilly has 2 brothers Things 1 & 2. Thing 1 Alex is 19, extremely funny and sometimes cool. Thing 2 Ellis is 9 also very funny and extremely handsome. All traits from their Mother, I will take credit.
Reillys autism has a big impact on their lives, more so Thing 2. He would prefer to spend more time at his grandparents house (5 minutes walk away) than at our home. There are a couple of reasons why:
Little sleep at home. Huge issue for him as he’s a sleep monster. Reilly has melatonin but this doesn’t keep him asleep it just helps drift off. This can result in hours of screaming, playing, lights on and off during the night.
Waited on hand and foot at Grandparents house. I am so busy trying to keep on top of normal things and stopping Reilly escaping, tipping food out, flooding bathrooms, jumping off window sills that the days of “mam can I have a drink” and it appearing 1 minute later are gone.
He does not have to fight for attention. Sad as that sounds it’s true.
Reillys meltdowns upset him an awful lot. He cries when Reilly cries and it’s absolutely heartbreaking.
I hate it. I hate that our family unit is so dysfunctional. I miss him even though he is at home a lot he should be there ALL of the time, that’s how it works. Many, many people have said well MAKE him stay at home and to that I raise my middle finger. We are doing our best and his happiness is paramount. It’ll work itself out soon I have no doubts.
I asked Ellis some questions recently for the blog which I will publish soon but his very first answer shocked me and made me cry. I said how do you feel about Reillys autism? I expected him to say, he gets on my nerves, he never sleeps, he’s boring, he doesn’t play with me etc. All things he would have said just 1 year ago.
He actually said:
I feel guilty. He went on to say I feel guilty that I don’t have autism, I have friends; I like going to the shops – I can talk.
I then got that feeling I get so often when someone is standing on my heart.
Ellis loves Reilly to bits and is very protective. In the moments when Reilly is up for it he will chase him around our living room, encourage him to get on his back for a horsey and Reilly loves it squeals with excitement. Little glimpses of how he would love them to play everyday. Reilly also loves Ellis, not so much at the minute. Ellis coughed recently and Reilly hasn’t forgiven him for that yet. When Ellis walks in Reilly runs upstairs and hides – this too will pass.
Having an autistic sibling can be really difficult. Social outings as a family become thin on the ground as there are many scenarios that we avoid like funfairs, cinema etc we have to split and rarely get seen altogether as a family. So much time is spent discussing Reilly at home with schooling and behaviours it can take over your life. Reilly likes to disrupt what Ellis is doing we’ve had to put a lock on the inside of his room so Ellis can go in and keep Reilly out! As much as Reilly can get on Ellis’s wick Ellis understands the difficulties Reilly faces and really does do his best to help him out.
He has no problem in telling people why his brother behaves the ways he does and can’t talk. Every time a new friend comes round I love to hear his explanations. He loves his football and his time with his dad doing that and sometimes Ellis and myself will have a sneaky hotel stay, just local and more importantly just us. Little things that mean such a lot.
He deserves lots of credit for being so understanding, so loving and so brilliant. He celebrates every bit of progress Reilly makes and he’s proud. Reilly I’m sure knows that Ellis is his best friend, buddies for life and his protector. Something I expect we’ll see much harder evidence of in the coming years. God help anyone that messes with this little brother ❤️. I have just this afternoon found out that the brilliant Autism Northumberland based in Manor Walks Cramlington are hosting a siblings event for these little guys like Ellis to get together talk, play and be appreciated in May. Brilliant idea and he’ll be attending for sure.
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.
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.