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.
Thought I would do a really quick post about the suggestions for Manor Walks to become autism friendly. Background is we had a bad experience with a security guard there, we complained and Manor Walks met with me to tell me their plans for a better shopping experience for people with autism and asked for my suggestions. Alongside Lesley Cole who founded Autism Northumberland and the North East Autism Society I’m hopeful for great changes.
The security staff have already has some training around autism which is great. There has been many emails with lots of different ideas of what would work well.
The most popular idea was a calming sensory area within Manor Walks to be used when things just become too much.
An evening where music would be turned off, tannoy announcements an absolute minimum, lighting dropped etc. Shopping without sensory overload. Manor Walks are talking to Lesley at Autism Northumberland already about this.
Personally one of the most difficult aspects of shopping with Reilly is stopping him running off, keeping him safe, avoiding meltdowns and finally actually being able to manage carrying the bags. These shopping trolleys are popping up more often and I think they would be a great introduction. To my knowledge Sainsburys has one as do Asda. It would be great to see Manor Walks take ownership of more of these trolleys and that they can be used throughout the whole shopping centre.
Changing spaces are so important not just to children with autism to many children and adults with special needs. Hand dryers are enemy number 1 for Reilly. As he gets bigger he is becoming increasingly harder to change, he is too big for drop down changing stations and will do a runner minus pants at any given opportunity. I cannot imagine how carers manage with an older, larger child/adult. A changing bed would solve many problems for many people. You should NEVER have to change a child/adult on a toilet floor.
Staff awareness not just with security but also within the shops or representatives from each shop.
Parking spaces and timings.
Much more still to be discussed but thought I’d just let you know there is progress and what the most popular suggestions are.
I’m looking forward to a catch up with Manor Walks and Autism Northumberland very soon. Please continue to send your suggestions.
Neurotypical (NT) is something I have heard in meetings and see on some of Reilly’s documents. Reilly is not neurotypical. I found the information below while googling neurotypical. I think it is brilliant & witty so thought I would share.
What is “neurotypical”?
Neurotypical syndrome is a neurobiological disorder characterized by preoccupation with social concerns, delusions of superiority, and obsession with conformity. Neurotypical individuals often assume that their experience of the world is either the only one, or the only correct one. NTs find it difficult to be alone and are often intolerant of seemingly minor differences in others. When in groups NTs are socially and behaviorally rigid, and frequently insist on the performance of dysfunctional, destructive, and even impossible rituals as a way of maintaining group identity. NTs find it difficult to communicate directly, and have a much higher incidence of lying as compared to persons on the autistic spectrum.
What is the cause?
NT is believed to be genetic in origin. Autopsies have shown the brain of the neurotypical to be typically smaller than that of an autistic individual and to have overdeveloped areas related to social behavior.
How common is it?
Tragically, as many as 149 out of every 150 individuals might be neurotypical.
Is there any treatment for NT?
There is no known cure for Neurotypical syndrome, however, many NTs have learned to compensate for their disabilities and interact normally with autistic persons.
I also found a book which popped up on my facebook feed last week. It’s called Why doesn’t Jonny flap? it’s a great book. I downloaded it this morning and its an absolute must.
For a welcome change this is a book that focuses on how a person on the autism spectrum could view the quirks of a person who is not and how they may seem a bit weird but that’s ok we accept them anyway. Reilly’s neurotypical brothers will be reading this book I think it will help them gain a different perspective.
Johnny is different. He is never exactly on time, he can’t seem to stick to a routine and he often speaks in cryptic idioms. Johnny is neurotypical, but that’s OK.
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.
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.