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.

Black & White by Reilly’s Dad

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.

Holiday shenanigans

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After a pretty much sleepless night last night I managed to tie myself in knots over our looming holiday.  After months of convincing I decided last year that I would be brave and try abroad with the family.  We chose a short flight with a short transfer which was 2 major ticks off my worry list.

We are off to Ibiza at the end of June and I am terrified!

I always get anxious being aware from home, it’s in my genes, it’s who I am but by god planning a holiday with Reilly is something else.

Reasons I don’t want to go:

  1. It’s easier at home (I have no proof of this yet 😂)
  2. Reilly doesn’t like seatbelts.
  3. I don’t know how he’ll cope with the airport or plane.
  4. What if there is no lock on my balcony door.
  5. What if the hotel door doesn’t have a lock on the inside.
  6. What if he wanders.
  7. He doesn’t like sun cream.
  8. He doesn’t like other people eating.
  9. He only eats beige things.
  10. What if he can’t sleep and wants to come home.  (This applies to me and him).
  11. I  hate planes.
  12. I’m too fat and have no clothes.

I could go on for hours covering reasons why we shouldn’t go.

Reasons we should go:

  1. Reilly and Ellis absolutely love the beach and the water.
  2. Ellis talks about nothing but going on holiday.
  3. We all need some Vitamin D on our skin.
  4. I really really really want to lie on a sun lounger with a book worry free for two hours.
  5. Reilly loves planes.
  6. I don’t want to cook for 11 days.
  7. I want nice food.
  8. I want to spend quality time with my boys.

So this is what I have done to try and make our holiday go as smooth as possible.

  • IPAD films, programmes, games downloaded.
  • I have played youtube videos of people boarding planes on a regular basis.
  • I have social stories for the journey. Airport Social Story
  • Small presents to be wrapped up in lots of cellotape and put in my bag for Reilly to open on flight if necessary (keep him busy – thankyou Tracey Smith).
  • Ear defenders purchased.
  • Airport emailed and form downloaded to assist us when we get there and boarding the plane last.  Newcastle Airport Autism Info
  • Purchasing a Crelling type harness to use in car and on plane.  No escape mate. Houdini standard.
  • Tracking device to be purchased to signal if Reilly wanders past 30 metres, falls in the water or is kidnapped ( I know but the fear is real).  Attaches to his clothes and links to my phone.
  • Full SPF swimsuit to be purchased and still testing different sun creams/sprays.
  • Plastic plate and bowl going in the case along with mini boxes of cereal.
  • Mam and Dad are coming as backup not just for us but to ensure Ellis doesn’t have a holiday of being restricted to Reilly’s wishes.
  • Hotel has been emailed with prior warning and my concerns about lock and things to climb on the balcony.
  • Asking my doctor for diazepam to actually get myself on the flight.

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Shane and I will split our time so we do actually enjoy some of what our holiday has to offer so it won’t be manic 24/7 but other than this I really don’t know what I can do.  The thought of him crying on the plane for 2 hours is unbearable but he loves planes and watches them all the time,  what if he loves it and just takes it all in.

Am I being selfish? Am I being stupid? what if?  what if?  what if?   arggghhhhhh.

We’ll soon find out and I’m sure the holiday blogs will  be absolutely crackers.

If you have any hints and tips for me please let me know.  The fear is real :).

 

 

 

 

 

 

Judgey Faced Grandparent’s 

 

 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.

Walking on egg shells (The kinder variety) 

Reilly is super sensitive at the minute.  He hates lots of things.  His latest is he doesn’t like cups of tea.  Doesn’t matter what colour the cup or what type of tea but he won’t tolerate it in the same room.  We have a one cup boiler and if he hears it he storms the kitchen trying to get on the bench by any means necessary and smash the offending cup.  This is really unfortunate for me as I love tea, I embarrass my friends by ordering tea pots in bars on a regular basis.   I’ve lost 4 cups this week alone. If it doesn’t smash the first time he’ll have it on the second.

I feel like I’m walking on eggshells in my own home.  If I need to cough I run to the garage or back garden so he doesn’t hear.  He doesn’t like anyone eating different food to him unless it’s dominos pizza, we are allowed that while he eats his strippers combo.

When Thing 2 has his tea it’s planned with military precision.  Distract Reilly, grab plate, go go go up the stairs and lock yourself in before he sees/smells it.  I have today for my lunch stood at the cooker eating while Reilly watch Thomas in the living room.  I’m down to my last few plates I need to be careful, I was hungry and I honestly couldn’t be arsed with the kick off it would initiate.

If Thing 1 wanders into the living room with a glass of Coke you would think it was a grenade.  GET THAT OUT OF HERE NOW!! Reilly would fight you for it to break the glass regardless of who you are and what your size is.

I don’t understand a lot of things with Reilly and this week has just given more things to add to the These things piss Reilly off list.  I have been told that he’ll have to get used to it and do it regardless, I would invite that person to come to my home for the afternoon and try this out.  The one and a half hour screaming, holding breath, smashing the house up should be enough to back my actions.

For now I’ll stick to stuffing things in my mouth while my head is still in the fridge or cupboard and stealth missions for a cup of tea.  Tips always welcome 😃.

Nickname for today – Joffrey 

 He did eat purple this week though. Top marks Joffrey ⭐️

He ate purple 💜 result !

 

Full Moon Rising

Anyone else’s children affected by the full moon? I’m sure Reilly is.  He’s been an absolute nightmare and really pushed us to the limit.  For 2 days when he has gone to school I’ve sat like a zombie in my pyjamas watching girly films to try cheer myself, how to be single and my big fat Greek wedding 2 to be precise, strange that because that’s his new nickname Reilly the Greek, he’s smashed 5 plates and 4 cups this week alone.  Ive bought some picnic plastic ones for safety and sanity.

Shane had to go pick him up from school tonight as he point blank refused to get in his transport.  We decided to take him to soft play and run off some energy, no he was having none of that – straight into Morrisons toy aisle where he rearranged the Cars 2 figures on the shelves.  We decided to do a sneaky try of Matalan, this was just plain foolish & I won’t recount the gory details.  I finished off the shopping while Shane entertained Reilly by going up and down in the lift.  When I met up with them 15 minutes later Shane had Reilly in a wheelchair doing wheelies to try and keep him from running away.  All the way home he tried to get out of his car seat and open the car door. Full on screaming all the way home which continued for another 20 minutes at home.

Naughty or aughty?  f@ck knows see my last blog 😂

And breathe. A knock at the door and there’s a lady called Tracey Smith who reads my blog, has an autistic son and lives locally.  She saw my post communication frustration and very kindly offered me all of her sons old PECS information.  To my absolute joy Tracey and her husband made me a set just for Reilly all sparkly and new.  I’m so grateful.  I do a lot for other people, and yes I can blow my own trumpet because I do.  North East Hearts with Goals is super successful and we do it as volunteers, 2 men are alive today as a direct action of our work,  I run a secret anxiety group and I tweet to raise awareness for Frankie Sherwood and his fight against cancer, if I can help you I will.  So when someone does something nice for me I really really appreciate it ❤️


While Tracey was at our house she caught the tail end of Reillys kick off, he tried to escape out the toilet window and threw his shoes outside.  She wasn’t fazed and quite enjoyed her visit I think.  She also got to see super lush Reilly just before leaving, sitting on his mams knee rubbing his nose on my face like a cat and giving out kisses.   I got some great tips from Tracey and hopefully we will catch up soon

A shitty negative day flipped on its head to a lovely positive outcome.  And Reilly is asleep which is a bonus 😂.  Pray he stays that way for at least 6 hours, I’m really tired.

Be kind.  One small gesture can mean the world to someone in need.  ❤️💚💙💜


Strainspotting 

DISCIPLINE:  The practice of training people to obey rules or a code of behaviour, using punishment to correct disobedience.   

Sounds like a Barbara Woodhouse book without the walkies.

Discipline.  I’m not a fan of the word.  I’m a free spirit, the word obey sends shivers down my spine and I’ve never been one to conform but it’s a word I’ve found myself googling a lot lately because:

  1. I don’t know how to discipline my child.
  2. I don’t know whether he should be disciplined.
  3. I’m still struggling to establish what is naughty and what is aughty.
  4. I need to help Reilly with self-control.
  5. The strain of managing Reilly out and about is near impossible.

Can you imagine how hard it is to even attempt to make your child understand that their behaviour is wrong or upsetting when they don’t know how to read emotion, you can’t have a conversation about it and you have no idea whether they understand you or not? When a neurotypical child is naughty you discuss it, remove toys, use a naughty step, ground them, whatever your chosen method and whatever works for you.  I did this with Alex & Ellis, probably once or twice (I did say I was a soft touch).  I can’t do this with Reilly.
A lady coughed in McDonalds yesterday and Reilly stood staring straight at her then lurched at her and pulled her hair.  Thankfully when I explained that coughing is a trigger for Reilly to kick off she was brilliant.  I did my usual No Reilly, nice hands, don’t pull hair and ushered him off into the corner where he decided he would pull my hair too. It was disastrous.  I couldn’t remove him because he won’t walk and I can’t carry him now like I used to.

So question is on this occasion was he reacting to the cough as misophonia, an extreme emotional reaction to ordinary sounds.  Does he not like coughing and just showing his distaste. Was he just being naughty? I honestly don’t know but I find it exhausting.

My fear is as he grows bigger and stronger this behaviour is going to be extremely difficult to handle and I’m searching for ways to communicate behaviours and help him understand.

Is it fair to discipline or punish a child that doesn’t know they’ve done anything wrong? I don’t think so and until I know it’s certainly not for me but how the hell do I work that out.

I welcome any advice from parents of non verbal children particularly around Reilly’s age on how they distinguish between behaviours and what positive methods they use to calm these situations, particularly teaching self-control.  I can’t be the only one struggling with this.

 Naughty or sensory seeking? Who knows?  not me that’s for sure. 

Rubbish

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.

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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.

Just one of those days.

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Neighbours must think we are absolute scruffs!

 

Trolley & dolly 

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.

Onwards & upwards for an easier life ❤

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