Switching schools

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

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

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

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

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

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

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Batten down the hatches

What on earth have I let myself in for?  I thought when I started the blog that I would prick a few ears up and stop some of the Judge Judy’s in our local shopping centre shooting the death stare at myself and other parents struggling to keep their cool under a the gaze of an impending meltdown.  Safe to say I think thats happened.  I have been stopped in shops by people I do not know who recognise Reilly and tell me how much they love the blog and how its changed their opinion on what they thought were naughty kids and lazy parents.

Result!

I have been invited to schools to talk to other parents about The Life of Reilly which I cannot wait to get cracking with and now I am one of three Directors of Alphabetically Autistic.  How the hell did that happen?  I mean I was busy before, really busy!  I am one half of a very successful charity North East Hearts with Goals, that is more than a full time job but its saving lives and keeping our communities safe so I won’t be stopping that, I need Harry Potter’s time turner if anyone has a spare?  For the first time in my life I am going to have to apply some organisation in my life.

 I’m a professional winger, thats wing not winge.  I’m never prepared but I always manage somehow.  My home is the same there is never a pair of socks available and if you ask me where my passport is I couldn’t tell you.  So embracing this is going to be a challenge but I challenge I embrace wholeheartedly.

I’ve said it before I’m no writer – I got a D in English and C in French so go figure but I love writing this blog and will continue to do so as long as I can.  I’m writing this one still in my PJs  and watching Love Island on catch up on the Ipad, its not ideal but it’s how I like it.  We announced Alphabetically Autistic this week and the response has been tremendous I am truly looking forward to trying to make a difference to our autistic families, one thing for sure it is a family.  Nobody understands you like another parent of an autistic person.

The Life of Reilly will have its first showing in November.  First stop The Exchange in North Shields last stop Broadway?  Who knows whats around the corner I don’t but i’m looking forward to finding out.  Im really looking forward to seeing Glenn McCrory treading the boards as Reilly’s dad.

There’s a moral to this post and it is if you aren’t happy with something, get up and do something.  No one will hear you unless you make some noise.

ps Watch out restaurants because i’m not happy with the choice of dairy free food on your menus haha 🙂 

Please support us where you can.  Share our information, encourage people to get in contact come and see the play.  For more information or if you would like to reserve some tickets for The Life of Reilly please drop me an email at alphaautistic@gmail.com let’s make sure the first showing is packed.

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Alphabetically Autistic – A Social Enterprise

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

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

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

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

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

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

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

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

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

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

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Poor Reilly – a trip to the hospital.

What an absolute nightmare day.  Holiday as I’ve said has been great but what I hadn’t shared as there was really no need was the fact that Reilly was heading into day 10 without having a number two!

We have tried all week fruit juices, water, laxatives from the pharmacy so today we had to take him to the local hospital.  Anyone who has an autistic child will know you can’t just give them natural lemon juice in some hot water or prunes to eat  like I’ve been to,d 1 hundred times – not happening, never.  Hospital visits are horrendous at home so the thought of the language barriers mixed with Reillys hatred for anywhere remotely medical and him being non verbal had all of us an anxious wreck.  As soon as we arrived he was inconsolable.

Mrs organised with her tracking devices, cards to explain he’s autistic in Spanish etc etc forgets the EHIC cards!! FFS man how dim!

Big Thankyou to my sister in law Kelly sorting us out temporary ones and having it faxed to the hospital. Superstar.

Explaining to Reilly that the lovely doctor who was about to stick a tube up his jacksy was not a monster was really difficult and we opted for a mild sedative.  Reilly is doing really well with his toilet training and I feared this may knock him back a long time as well as be traumatic for him.

Did it the enema work? Of course it didn’t.  This is us we are talking about. Nothing is ever plain sailing.

2nd enema has worked I’m very pleased to report.  So currently Reilly’s sedative is wearing off and he’s hopefully a lot more comfortable and I haven’t had to reach for the diazepam which is a yay for me.  Shane on the other hand is still a wreck pinning your 4 year old down on a sunny Thursday afternoon is not what we had in mind.

My cards helped enormously again with the staff in the hospital who were a bit bewildered by his behaviour.

Let’s hope for a great last day tomorrow.  Keeping everything crossed.


3 hours later …… Quick update our room smells like a drain but he’s now back to his old self again.  Happy days 😀🙈

 

Do you think my child is autistic?

Crikey what a question but one I’ve been asked many times over the last month or so. I made a cake once but I’m not Mary Berry, please remember this.

Children with ASD don’t all have exactly the same symptoms and children that do have the same symptoms can differ in severity massively.

Reilly developed pretty typically sitting, crawling, walking all at the usual milestones.  He even had a few words at around 16 months then the words stopped pretty much overnight  around that time.

Reilly never babbled as a baby.  I remember saying to people he’s so silent. Literally not a sound.  He didn’t respond to his name either.  I could say Reilly 20 times and he wouldn’t turn his head once.  These were my biggest red flags.

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Since I started the blog I must have had a dozen ‘do you think my child has autism?’ questions.

I could never answer that! Ermmm I gotta run is my normal response.  What I would say is I have 2 neuro-typical (not autistic) children and they both displayed some of the signs listed as a nod to autistic behaviour.  Just because your child lines up his/her cars or trains (- all 3 of mine did this) doesn’t mean they will get a diagnosis.

It’s way more complicated and you must meet the 3 main criteria as shown in the chart.

 

So I thought I would do a comparison between the common signs and how Reilly measured up.

No babbling as a baby – Reilly was a silent as a mouse.

Poor eye contact – fleeting glances but rare to hold a gaze upto age 3.  He’s much better at it now.

No response to calling name – I could shout 20 times and he wouldn’t turn his head until turning 4.  Now he does most of the time.

Speech regression – Reilly did have a few words around 16 months and they stopped almost overnight.

Lack of empathy – I have seen Reilly only twice show concern for someone.  Once when a friend was upset and he spontaneously got on the chair behind her and gave her a cuddle.  The other was a lady sitting with her feet in the sand pit at Morpeth park, she looked sad and deep in thought.  He crossed the sand pit and stroked her hair.  Incredible to see for us.

Uninterested in making friends – We went on holiday with our friends when he was 2.  Not once did he initiate any type of play or even acknowledge that little H was there. Heartbreaking for us – for Reilly just another day at the office.  Alex my oldest used to stand on his own in the playground nearly every day dropping stones down the drain, he’s not autistic.

Doesn’t like cuddles – Couldn’t be further from the truth.  We nickname him the guppy as he comes at you with his lips in sucker mode and attaches to your cheek.  This is a red flag for many other children on the spectrum.

Spontaneous laughter – This used to freak me out but not now I love it. Sometimes he will burst into laughter at absolutely nothing.  Really big hearty fits of uncontrollable giggles.  They stop as quick as they start.

No pointing – Reilly does point at pretty much anything and everything – planes, the big yellow M of McDs, cats, birds, food. Many autistic children do not.

Repeats exactly what others say without understanding – I wish.  Not applicable as he doesn’t talk.

Doesn’t use toys or  objects in pretend play – yes he does but not until age 3.  He loves a play in a little kitchen or making car crashes with the cast of Cars 2.

May have a good  memory – exceptional he remembers roads etc and often surprises us.

Rocks, spins, walks on toes for a long time or flaps hands  – Reilly doesn’t do any of these.

Likes routines, order, and rituals; has difficulty with change – he likes things the same I only wish this applied to the mountains of cars and train tracks strewn all over my conservatory.

Obsessed with a few activities doing them repeatedly during the day – He loves trains they are pretty much his everything but  I feel this could apply to most small children.  Alex was obsessed with watching Winnie the Pooh, it’s all he did.  Ellis loved electricity pylons took us months to work out why he shouted four-four when we passed them.  It was from the old channel 4 adverts (go figure).

Plays with parts of toys instead of the whole toy – Nope!

Doesn’t seem to feel pain – He’s rock!  Rarely cries through anything physical.

Sensory issues – Reilly has big issues with certain noises, he also likes rough textures and loves cold.

Meltdowns – Not to be confused with tantrums just to get their own way.  I’ve seen plenty of tantrums over the  years from my oldest two and a meltdown blows it out the water.  A meltdown is relentless, its sometimes violent, can be dangerous and its extremely upsetting.

There are many more signs but if you really suspect your child, grandchild, etc has autism then you already know this as you’ve already googled it and watched the youtube videos.

TRUST YOUR PARENTAL INSTINCTS.

I absolutely knew Reilly was autistic well before his diagnosis.  When Ellis was very ill as a baby I knew there was something they were missing and I was right.  Don’t be fobbed off if you aren’t satisfied.

If you are concerned cold hard evidence and facts will help massively.  Take photographs, video behaviours that you are concerned about, keep a diary of what happens before, during and after meltdowns.

They sometimes have an awesome ability to behave in the exact opposite manner you’d expect them to when with the professionals that are monitoring your child thus making you out to be the biggest liar in liar town.

Be prepared time is everything the quicker everything is set in stone the quicker the right interventions can be made.  We got a diagnosis at 3 and were very lucky to get one so quickly.

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The Life of Reilly coming to a stage near you!

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 ❤️

 

Cramlingtons got talent 

Today was a strange one. This morning was normal Reilly emptied a full huge bottle of Bold 2 in 1 into the washer, emptied a tub of gravy granules and a packet of oats over Miss Rabbit, put my shoes in the paddling pool then proceeded to have THE biggest meltdown I’ve ever seen.  This one involved screaming at the top of his voice and trying to get his foot stuck in the letterbox.  The neighbours must honestly think we are crackers.  This was the type of episode where it does not matter what I do or say it’s got to run its course so all I can do is make sure he’s safe.

 

After approx 45 minutes calm was restored and I needed to get out the house. I ventured out to the softplay at Concordia in Cramlington, Shane was already there at the bowling alley with Ellis and his friend.  The lady on reception was an absolute diamond.  She gave me tons of info on  how and what was available to Reilly via Active Northumberland.  Unfortunately Reilly wasn’t interested in softplay one bit and saw the clip and climb as a much better focus for his attention, trying to get a foot on to scale the massive walls with no fear what so ever.  The staff in there again were fantastic and also gave me details of autism activities such as trampolining etc.  I love it when staff are understanding and make us feel welcome it makes such a difference.

I had no idea what Reilly would think of the bowling alley it’s quite dark and noisy but again he loved it, had to be retrieved from half way down the lanes and attempted to get his legs in the bowling ball dispenser but other than that he was happy. Result.

We nipped across to McDonalds with the boys but the play area was closing.  I had a quick chat with a lovely girl called Rachel and explained Reilly had been in with school 2 weeks previous and that he would expect to go in again because well that’s just what he does. Rachel allowed us in on our own and pulled down the shutters half way.  This equalled 1 happy Reilly which equals 2 less stressed parents.  We chatted to Rachel and Manager Michael while eating and they were incredibly inquisitive as to how they could be more helpful to families with autism. What a difference a bit of understanding makes to our little families.

      What a stark contrast to the bad experience we had when I first started this blog.  I feel like autism acceptance is growing.

Well done Cramlington keep it up. ⭐️

Tim Lamb Centre – We fit in! 


This morning we decided we would go and visit the Tim Lamb Centre at the Rising Sun Country Park in Benton, Newcastle.  Reilly has been there many times with school and always seems to enjoy it so on a rare Saturday off for Shane we decided to check it out.  As always we showed Reilly photographs of the centre and he happily got into the car, this usually only happens on being shown photos of Toys R Us, Smyth’s or kinder eggs.  Result.

Only around 10 minutes by car from my house The Tim Lamb Centre was like a little hidden gem that I should have found way earlier.  We were shown around by a lovely young lady and I was really impressed by the facilities.

  1. Baby & toddler room packed with toys, play kitchens etc
  2. Art & crafts room
  3. Teen room with gaming consoles etc
  4. Trampoline room with 3 trampolines and enough Lego to build another centre
  5. Music room
  6. Sensory room fully equipped with sensory lights, wires etc
  7. IT Suite
  8. Soft play area
  9. Cafe
  10. Special toilets & changing bed
  11. Enormous outdoor play area – swings, slides, ride ons, climbing frames
  12. Chickens, guinea pigs, goats & rabbits!

But best of all was what there wasn’t.  No judgey glares – the pressure was off.  I am always in fear of the next meltdown and where it will be but not here.  Everyone gets it.

The centre is for children with additional needs and their siblings. We signed up for a year immediately  (£15 plus £2 per session).  This also enables you to apply for a stay (for a fee) at one of their lovely caravans at Haggerston Castle or Appleby too.

 
I need somewhere like this where I can actually relax with Reilly, no tuts, no parenting advice from old codgers on how a smack would sort him out and a cup of tea in peace while he plays where he feels comfortable and is accepted. Priceless.


Pathways 4 all are a charity and a great one at that I know we will be returning frequently.

I also must say the name Tim Lamb was really familiar to me and it came to me that this was the gentleman that was spoken of very highly when we started the charity North East Hearts with Goals I believe he was a keen advocate of the placement of defibrillators as Metrocentre Manager.  So a shared passion of making lives easier for those with different abilities and for saving lives. A great combination I’m sure we all agree.  Strange how things link up.

Check it out, you might see me – I’ll be the one yawning and frazzled trying to stop Reilly having a wobbler ……. oh hang on that’s right that’s  not just me anymore 😄.

A great day apart from he didn’t want to come home and attempted an escape from his car seat for the entire journey complete with screaming of banshee proportions.  I’m pretty certain passing drivers would have noted the reg.  Most of the night spent sat in the car which is his new favourite place.

Today’s nickname Luke Cloud Walker.

 

The photo that made me cry

Interacting with Reilly is pretty difficult.  He doesn’t like round and round the garden or this little piggy. He doesn’t care what the cow or the pig says.  He doesn’t dance. He doesn’t talk but this doesn’t stop us from trying everyday to get a bit of interaction going.

I’m not the crying type occasionally watching extreme makeover home edition some rogue tears will sneak out.  Hodor’s demise this week caused a flood as did Claire and Jamie’s baby in Outlander (Escapism at its finest you should try it) but that’s about it. This photo however makes me cry happy tears just looking at it.

Reilly is nearly 5 and probably off and on every other day since about the age of 3 I’ve said lets see your funny face.  He looks at me as if I’m stupid then cracks on with building, tracks, jumping on the bed or flooding the bathroom.

Nope wasn’t happening but I kept the faith.

One night sitting on the bed I switched my phone to selfie mode to let Reilly have a look at himself.  He loves himself and will happily check himself in the mirror at every given opportunity, not sure where he gets that from.  As always I said Reilly let’s see your funny face and boom there it was.  2 years of trying and he does it on command.  It was a breakthrough and I was ecstatic, still am.

Never give up.

Progress no matter how small it may seem to others is hugely significant in special needs families and should be celebrated like we did by taking about 50 more 😊.

Simple things.

Important talks with Manor Walks

 A few weeks back my family had an unpleasant, upsetting experience at our local shopping centre. I’ll keep it short – Reilly had a meltdown in Asda and my husband took him out, he bolted through the centre to the other side. A security guard then wouldn’t allow them back through to myself and thing 2 even though my husband explained Reilly had autism and was overwhelmed. The guard was completely unsympathetic, the air turned blue and my husband had to walk right around the outside of the shopping centre carry Reilly at night with cars, lights, noises, darkness etc and it’s a fair distance to boot too so you can imagine the state of Reilly and dad by the time we were reunited.  I got home and eventually calmed Reilly’s meltdown after 45 minutes. Thing 2 left to sleep at Grandmas as he gets upset at Reilly being upset and can’t bare to watch.

I settled myself down with a cup of tea and had a Facebook rant, a huge one. I was extremely angry.  This opened a private dialogue with Sarah Turnbull at Manor Walks and I was invited along to talk to Bruno – Manor Walks Manager, Ian – Security Manager and Sarah to discuss what had happened. I attended that meeting today with my sister in law Kelly, moral support and she’s well versed on autism.

I was thrilled to find out they’d already begun staff training to recognise and understand what autism is with the North East Autism Society and were genuinely very keen to make amends, were very apologetic, absolutely mortified at the lack of humility shown and importantly they also invited me to become an ambassador to work with them to improve shopping at Manor Walks for people with autism and their parents and carers. I say people because this is not just about children. Autistic children become autistic adults at the end of the day and are still affected by sensory issues and the same judgemental glares that us parents are subjected to by other shoppers. The ultimate aim is for Manor Walks to reach the North East Autism Society’s charter standard and meet all their criteria to become autism friendly.

  
I will put 100% into working with them to make visiting Manor Walks less stressful. We decided immediately on an autism awareness day right through the centre aimed at educating shoppers and staff of the issues surrounding autism, we all know a little understanding goes a long way.   A shopping event was discussed too with lights low, music off, autism aware staff on duty etc I know this is popular at Christmas was autism families at Toys R Us stores and has been really successful.

Autism needs to be accepted it’s here to stay. I’ve been told numerous times “he needs a smack” “mine would never behave like that” insinuating I’m a bad parent, I’ve also heard “he’s too old for nappies”.  Well judgey woman and friend thanks ever so much for your autism parenting advice based on episode 1 of the A Word and Rain Man in 1985 but I think I’ll give it a miss and politely ask you to jog on.

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Please let me know of any ideas you would like to see implemented and I will make sure they are passed along at our next meeting. Leave no stone unturned – trolleys, parking, lighting, eating, seating, queueing –  if you think it can make a difference share your ideas. I am confident that this will turn out to be a really positive experience making all our lives a little bit easier.  I will be posting further updates regarding Manor Walks as and when they come up.

There is an excellent charity Autism Northumberland based upstairs in Manor Walks already providing great services and facilities to families affected by autism and well worth a visit. I know their opinions on transforming Manor Walks will be greatly valued.